Autism Acceptance Week
This year we celebrate Autism Acceptance Week from 27th-2nd April. At the Autism Service, we would like to use this opportunity to focus on some of the many issues affecting autistic adults and their families.
Autism is a lifelong, developmental condition that affects how a person communicates with and relates to other people, and how they experience the world around them. Autism is a spectrum, this means that every person on the autism spectrum has problems to some degree with social interaction, empathy, communication, and flexible behaviour. But the level of disability and the combination of symptoms varies tremendously from person to person, and this is why the term spectrum is used to describe the condition.
Identification, or diagnosis, is not just a “label”, it is the official recognition by professionals that the person has a condition and will have the difficulties commonly associated with the condition and is, therefore, eligible for additional support or reasonable accommodations in certain situations.
Autistic adults need to be aware that there is help and support available but this help is limited. Once someone gets a diagnosis autism, they need to become experts in the condition and on themselves, so they can advocate for themselves and look for the specific support that can make a difference to them.
Our Events this week
Photo credit: Ian Bowkett.
Autistic non-binary Comedian, Cerys Bradley will be presenting a short presentation for Barnet Mencap’s Autism Service about their autism journey and comedy
6pm Thursday 30th March via zoom as part of Autism acceptance week
Cerys Bradley is a writer, comedian and trainee teacher. They won the first ever Neurodiverse Review Award for Actually Autistic Excellence at the Edinburgh Fringe 2022. They’re a Quantum Leopard Champion of Champions (2021) and a member of the Soho Theatre Young Company (2019). They make alternative comedy about their autistic non-binary experience.
We will also be having our usual social get-together for members, if you are planning on coming along, please let either the Autism Service or Project Support know.
Autism and employment
The Office for National Statistics (ONS) has published data that shows just 22% of autistic adults are in any kind of employment, however, 76% of people aged 16 to 64 in the general population in England are in paid work (ONS 2019b).
Autistic adults are at a disadvantage when it comes to accessing the job market. If there is no adequate identification and early intervention, and support during transition, it is going to be very difficult for an autistic person to learn the skills and qualifications to get a job and in consequence it will affect their ability to become financially independent adults, hence the importance of tackling this issue.
Autism is a lifelong condition, so the support must not just apply to access work but also must help autistic people remain in employment.
Autism is a disability and therefore is a protected characteristic under the Equality Act 2010. Being protected by the Equality Act means autistic people should be treated equally and fairly in the workplace, and should not be discriminated against on the grounds of their disability. It also means that the employer should make reasonable adjustments to help them at work.
What are reasonable adjustments? Reasonable adjustments remove or minimise disadvantages experienced by disabled people. Employers should also make sure policies and practices do not put disabled people at a disadvantage.
What does reasonable mean? What is reasonable will depend on the circumstances of each individual case. And it will depend on an assessment of factors including:
- Is the adjustment practical to make?
- Does the employer have the resources to pay for it?
- Will the adjustment be effective in overcoming or reducing the disadvantage in the workplace?
- Will the adjustment have an adverse impact on the health & safety of others?
The autistic person can, and should, think about what reasonable adjustments they need at their workplace, but then they will have to discuss it with their employer and come to an agreement as to what adjustments to put in place. These should be reviewed regularly and modify as needed.
There are some services that offer specialised support to access work: https://www.scope.org.uk/employment-services/support-to-work/?gclid=CjwKCAiAgvKQBhBbEiwAaPQw3NZoq3bJKhUZt64RxKuGSaf–tZUyjKi3t-sAYO-t3JSXXqXNhKPYBoCoZMQAvD_BwE
https://www.employmentautism.org.uk/
Autism and women
Autism is an invisible condition. You cannot tell someone is autistic just by looking at them. You might notice they are “shy”, “quirky” or “different” but many people stop there and don’t question whether there is an explanation for these behaviours. In the case of autism this is even more evident, as they may be good students and thrive in an academic, well structured, environment. Within adults with autism, women have it even worse: old views on autism think that autism is mainly a “male” condition, something we see in little boys, not in grown up women.
Men and women present autism differently. Historically there has been a strong bias in diagnosing autism: boys/men are more likely to be picked up by professionals while girls/women were often overlooked and missed identification and therefore, support.
Autism prevalence in the UK is 1 in 100 (NHS). There is a difference in prevalence between men and women, depending on the studies: it can go from 1 woman for every 4 male to 1 female for every 15 men on the spectrum (Fombonne 2005)
Lorna Wing found in her 1981 paper on sex ratios in early childhood autism that among people with autism there were 15 times more men and boys than women and girls, while in autistic people with learning difficulties, the ratio of men and boys to women and girls was closer to 2:1
Many women start wondering about their difficulties later on in life, often after a long chain of mental health professionals and diagnostics have been put in place, when they realise that none of those diagnosis really accounts for all their difficulties.
It is very common too for women to realise they might be autistic when their own children are diagnosed. Mums will notice the difficulties their children have are the same one they had as children themselves and decide to seek further advice.
If you are a woman living in Barnet and feel you might be autistic, please contact the Autism Service to arrange an autism screening.
Want to know more about autism in women? Please visit:
https://www.spectrumnews.org/opinion/viewpoint/women-autism-hide-complex-struggles-behind-masks/
Autism and adulthood
Many autistic people have no learning disabilities (ie, their IQ level is average or above average) but many of them will have learning difficulties and will learn differently, often needed additional support to keep up with their peers. Early identification can help autistic people and those around them understand the condition better and put the right support in place so they can access education and transition into adulthood.
People with autism often can easily fall through the gaps of the system: people around them like parents, teachers, GPs, etc might realised they are different, quirky or shy but, since they might be doing well academically or not displaying very challenging behaviour, their difficulties are not explored any further and therefore the person’s additional needs remain unidentified. This can have a big impact in the person’s life as the difficulties might become more apparent or more limiting later on in life, when they go to university or access the job market. The emotional cost of not identifying the condition has to be taken into account too. Autistic people often say they always knew they were different, other people around them noticed this too and blamed them for their behaviour. “You are a drama queen”, “you are selfish”, “what is wrong with you?”….These comments and the lack of support impact negatively in autistic people’s wellbeing, self-esteem, self image and a diagnosis can help them feel validated and to make sense of their lifelong experiences.
For young people transitioning into adulthood, a diagnosis can be extremely helpful, as it can open the door to services and support that they will need in order to keep up with their peer and become independent adults. What services are these? It will vary from person to person. Some might need specialised autistic support, others might access mainstream services. In most cases it will be a matter of trial and error: nobody can tell if a service will be the right one for you so if things don’t work out well, you can try accessing a different service. There is one thing that everyone can do to improve their chances of accessing services that work for them: they need to know themselves and understand their condition. If the autistic person does not know what it is they struggle with, they won’t be able to request specific help.
The Autism Service offers free online autism workshops to adults living in Barnet with a diagnosis of autism or suspected autism. We cover different topics, such as employment, mental health, ASD and ADHD, Autism in women, sensory issues, developing coping strategies, etc.
In 2022 we will offer a free online transition session for young people with autism or who think they might be autistic. Keep an eye on our website for more information about this session.
Suicide and self harm
With all the difficulties autistic people face on their day to day lives, lack of support, mental health difficulties, etc it is o surprising to learn that adults with autism are significantly more likely to die by suicide than the general population
People with autism die over 16 years earlier than non-autistic people.
People with autism and learning disabilities die over 30 years before non-autistic people.
After heart disease, suicide is now the leading cause of early death in adults with autism and no learning disabilities. That is 9 times more likely than the general population to die by suicide.
If you are autistic and feel you are struggling, do not hesitate to ask for help. Talk to your GP or, if it is an emergency, go to A&E.
Professionals should be aware of this increased risk and when working with autistic individuals or suspected autistic individuals, they should pay close attention to any red flag.
If you want to know more about autism and suicide, visit Autistica’s website and read Personal tragedies, public crisis:
https://www.autistica.org.uk/downloads/files/Personal-tragedies-public-crisis-ONLINE.pdf
There is a new service available in Barnet: Andy’s Man Club
Andys Man Club is a men’s mental health and suicide prevention charity that offers peer to peer support.
🖤We’re on a mission to get men talking! Come along to our first session to have a chat, share and support others.
Open to anyone over the age of 18 years
⚫When: Every Monday (excluding holidays) at 7pm
⚫Where: Meridian Wellbeing Centre, Church End, Hendon, NW4 4JT
⚫How: No need to book just turn up
Autism and family
Autism not only affects the autistic individuals. With an estimated 700,000 autistic adults and children in the UK – approximately 1% of the population – most people probably know someone who is autistic. In addition, there are an estimated 3 million family members and carers of autistic people in the UK (National Autistic Society).
Parents and carers of autistic adults might not be aware they are carers. They might think that managing their son or daughter’s appointments, making calls on their behalf, driving them around, cooking for them, remind them to take a shower or tidy up their room, etc is part of being a parent. And it is, up to a certain point. When your child becomes an adult they are expected to be independent and make their own decisions. If you are still doing things for them, as if they were 12, you might be a carer. It doesn’t matter if your son or daughter has a university degree, if you have to go with him/her to appointments and speak to receptionists on their behalf, you are carrying out a caring role and your son or daughter probably has care needs.
If this is your case, there is help and support available for you. You can contact the Autism service and have a chat with us about you and your son or daughter.
You can also contact Barnet Carers centre and discuss your situation with them: https://barnetcarers.org/
Why is it important to recognise if you are a carer? Why is it important to identify whether your grown up son or daughter has additional needs? First of all, so you all can get the support you need. In second place, and in the long run, you want to make sure your son or daughter gains the life skills needed to become an independent adult.
If something happened to you overnight and suddenly you are not there anymore for your loved ones, how would that impact your son or daughter’s wellbeing? If you have concerns about how they would manage, then you need to start taking action and putting support in place. This may mean researching independent travel training, learning how to manage their finances, learning how to cook and look after their house, accessing social groups to avoid isolation, arrange supported living, getting financial and legal advice, etc.